Slowly but surely......

Hey everyone,

Just wanted to say hi and let you know how my last couple of days have been. Wednesday evening was a little upsetting for my mommy. Daddy and her had planned on going to the Reds game, and Daddy stepped out early to run over to the RMH house, leaving mommy with me. Shortly before she was supposed to leave, I woke up, needing to be suctioned and I got very upset. I did not want to lay still, very scared and mad that people were in my face trying to get my "goobies" out. I wanted no part of it. My mommy began to get upset, practically crying, because she did not know what to do to help me. The doctors came around for rounds and saw how upset I was, so they decided that I could not tolerate my collar trials and put me back on my ventilator support. Plus they decided to make my pain med scheduled again, it was as needed and that was not working. I was still a little aggitated, and got upset again, and my mommy had to hold me in order to calm me down. I nestled into her for a few minutes, but then Spongebob came on, and I was so excited I had to sit back in the bed so I could watch and play in mommy's purse. This was fun, but shortly later I wanted to lay back down. I eventually fell asleep and mommy stepped out to meet daddy. Little did I know that mommy decided not to go with Daddy and he went with another heart parent here on the floor to enjoy the game. Mommy took a break from the hospital by herself for a bit, went to Michael's (one of her fav stores) and then came back to spend the evening with me. I was much happier once she came back, rested and she was even able to wash my hair, make it pretty, give me a bath, and a lotion massage. It was sooo nice. Me and mommy smiled and wiggled and enjoyed our time. They weighed me again and I was 12 kg, 26.4 lbs. So a little less, but I am still chunkier than before :) Daddy came back and I kept them here late because I was awake, but then they went home to bed.

Yesterday went well. I was a little happier than the day before, I rested all night, while on my ventilator support. Today they were able to pull back my NJ tube to NG-food in my belly!! Finally!!! They started me out low, at 5ml per hour. If I tolerated it well, they would move me up after 24 hours. Since I was working on my feeds, they decided to keep my respiratory the same, no change on my rate or any trials. Just trying to give me a break. I tolerated most of the times they wanted to suction and do care, but not always. Just varied. I worked with OT, PT and speech. For the most part I liked it, but for only about 5 minutes at a time, then wanted to rest. Mommy got to give me another bath today, which was nice. But it was short lived, I was tired and did not want to be touched anymore. They have to clean my incision from surgery and that hurts. Hopefully it will feel better soon. I vomited mucous before mommy and daddy came back, and it was really yellow. They were concerned about infection, but I did not have a fever, so no worries yet.

Today went better than yesterday. I woke up happy, around 7a. Mommy and daddy came early for rounds, the docs were pleased with how happy I was. They decided to extend my pain med out to every 6 hours and not every 4. Also, they decided to increase my feeds to 10 ml and if I do well this weekend, keep going up at a steady pace. We will see how I do. To give me a break while I sleep they are only doing my assessments every 3 hours and not 2. They decided to start my chest therapy back up to make sure that I keep the secretions in my chest. I did ok but my settings have to be really low. I like to wiggle in my vest, it's fun. I did well with my pain med being stretched out, it was tolerated. Shortly after my feeds went up, I had a little spit up from my medicine, but I was ok. It was gross, hopefully that will not happen again. Cross our fingers. I had a blast with speech this morning, I learned a new sign, "all done". So, we have goals of what we play and then when I am finished I am to tell them I am "all done". I am learning :) I played with OT and PT this morning which was fun, but I became tired quick. PT tried again this afternoon, but I wanted no part of it, just wanted to set in mommy's lap. I love my mommy. No big change with me tonight. I went on a pressure support trial about 12 today, no ventilator rate and I lasted until 6p. At that time I was dropping my oxygen levels and then I would go back up and then down. So, they decided to put me back on the rate for the evening so I would rest. I fell asleep and mommy and daddy went to dinner. They came back and gave me a bath and did my trach care. I got really upset during this and wanted to go to sleep and made it really hard for mommy and daddy to finish, but they finally were able to calm me down. So, we finished and got me settled with my bear and now I am sleeping. Hopefully I will do well tonight and tomorrow will be another step forward. Dr. E. stopped by to see how I was doing, I blew him kisses and gave him high five. He was happy I was doing well and glad to see me setting up in bed. Baby steps :) Today mommy and daddy met a support group person to talk about maybe starting a group for CHD families at home, so they can have people to talk to. This would help them a lot, I hope they can meet others at home.

So, I will let mommy and daddy go to bed now. Everybody keep praying for me and mommy and daddy. Mommy and dadddy are so tired and want to take me home really soon. They appreciate everyone soooo much and cannot thank you enough. Night Night and Buh Bye

Love, Jenna